Brian Ilg

I would like to introduce you to the Ilg Family of Patchogue, NY.  Greg and Arlene are the proud parents of two children.  Annalise who is 2 and Brian who is 9 months.  The story I present to you is about baby Brian.  Brian has a very rare and excruciatingly painful disease called Epidermolysis Bullosa,(EB).

EB is genetic skin disease where the skin layers aren't connected and are as fragile as a butterfly's wings.  This skin disease causes blistering and skin shearing.  In severe cases like Brian's, this disease is internal and external.  just a common touch, a hug, a gentle stroke, drinking from a baby bottle and swallowing food, can cause blisters and wounds.  At his current age, his parents are saying  that for him to swallow even soft foods is painful.

EB has no race discrimination and is a debilitating disease.  Imagine not being able to play childhood games such as "Pat-a-Cake." Imagine not being able to bathe unless in bandages.  As a matter of fact,  Brian's first bath was just a few weeks ago. Walking, riding a bike, using his hands to play with his toys, writing; these are all challenges for Brian's future.

To give you a visual, walking can cause blisters on the soles of your feet, and shoes rubbing up against their toes do damage.  When the damage skin heals, it very well can heal and trap the toes under the skin.  The digits become fused and unusable!  Consider too, that hand injuries when they heal, can also fuse the fingers making the useless.

Brian's future is a difficult one to peek into.  His family takes things moment to moment.  Every day is a new experience and a new challenge both physically and emotionally, for the parent, Brian and his sister.

Another major problem in EB sufferer is nutrition.  The body is busy enough growing and doing every day things such as breathing, digestion, etc.  This takes energy which is attained from nutrition.  Because Brian's body uses to much nutrition and energy to heal wounds, his body has a hard time doing what you and I call normal.  The fear is that Brian's body may not be able to thrive.  Complication and speculations are endless reality.

Add to all the physical ailments and emotional dealings, financial troubles.  It's a shame that finances would have to be a concern.  Insurance companies don't help much, if at all.  Greg and Arlene exhausted their insurance's support a mere ten days into Brian's life.

Bandages and ointments for the average EB patient range from $1500 to $5000 per month!  Their supplies aren't covered since they are over the counter and considered not medically necessary.

When an EB baby is sent home from the hospital, they go home with wounds comparable to 3rd degree burns over most of their bodies.  They go home with no bandages or wound care.  Wound care is absolutely necessary to avoid future infections.  Wound care also helps to prevent skin cancers that are too common in EB patients.  Many, EB suffers lose their lives to skin cancer.

Greg and Arlene struggle also with finances because they cannot find a capable and/or willing nurse to stay with Brian.  Many come one day and can't bear to come back the next. As of now, Greg and Arlene work in intervals.  Greg was just off for three weeks to take of Brian and his many needs.  Arlene will then take her turn.

Won't you please consider helping out the Ilg Family.  The emotional stress of this disease is hardly bearable and the financial issues should be the last thing they should have to think about.

Thank You for your time and consideration.

Sincerely,

Kristina Montes
1 Fable Road, St.James, NY 11780

Please send Donation to : Brian Gregory Ilg Foundation
                                           48 S. Prospect Ave.
                                           Patchogue, NY 11772